se-atlas.de – Versorgungsatlas für Menschen mit Seltenen Erkrankungen

por Neff, Michaela, Schaaf, Jannik, Tegtbauer, Niels, Schäfer, Johanna, Till, Manuela, Wagner, Thomas O. F., Graeßner, Holm, Mundlos, Christine, Storf, Holger
Publicado 2021

Erratum to “Practical Guidelines: Lung Transplantation in Patients with Cystic Fibrosis”

por Hirche, T. O., Knoop, C., Hebestreit, H., Shimmin, D., Solé, A., Elborn, J. S., Ellemunter, H., Aurora, P., Hogardt, M., Wagner, T. O. F.
Publicado 2015

How to design a registry for undiagnosed patients in the framework of rare disease diagnosis: suggestions on software, data set and coding system

por Berger, Alexandra, Rustemeier, Anne-Kathrin, Göbel, Jens, Kadioglu, Dennis, Britz, Vanessa, Schubert, Katharina, Mohnike, Klaus, Storf, Holger, Wagner, Thomas O. F.
Publicado 2021

Practical Guidelines: Lung Transplantation in Patients with Cystic Fibrosis

por Hirche, T. O., Knoop, C., Hebestreit, H., Shimmin, D., Solé, A., Elborn, J. S., Ellemunter, H., Aurora, P., Hogardt, M., Wagner, T. O. F., ECORN-CF Study Group
Publicado 2014

Telephone health services in the field of rare diseases: a qualitative interview study examining the needs of patients, relatives, and health care professionals in Germany

por Babac, Ana, Frank, Martin, Pauer, Frédéric, Litzkendorf, Svenja, Rosenfeldt, Daniel, Lührs, Verena, Biehl, Lisa, Hartz, Tobias, Storf, Holger, Schauer, Franziska, Wagner, Thomas O. F., Graf von der Schulenburg, J-Matthias
Publicado 2018

Impact of a Gap Junction Protein Alpha 4 Variant on Clinical Disease Phenotype in F508del Homozygous Patients With Cystic Fibrosis

por Horn, Tabea, Ludwig, Michael, Eickmeier, Olaf, Neerinex, Anne H., Maitland-van der Zee, Anke H., Smaczny, Christina, Wagner, Thomas O. F., Schubert, Ralf, Zielen, Stefan, Majoor, Christof, Bos, Lieuwe D., Schmitt-Grohé, Sabina
Publicado 2020

Dual guidance structure for evaluation of patients with unclear diagnosis in centers for rare diseases (ZSE-DUO): study protocol for a controlled multi-center cohort study

por Hebestreit, Helge, Zeidler, Cornelia, Schippers, Christopher, de Zwaan, Martina, Deckert, Jürgen, Heuschmann, Peter, Krauth, Christian, Bullinger, Monika, Berger, Alexandra, Berneburg, Mark, Brandstetter, Lilly, Deibele, Anna, Dieris-Hirche, Jan, Graessner, Holm, Gündel, Harald, Herpertz, Stephan, Heuft, Gereon, Lapstich, Anne-Marie, Lücke, Thomas, Maisch, Tim, Mundlos, Christine, Petermann-Meyer, Andrea, Müller, Susanne, Ott, Stephan, Pfister, Lisa, Quitmann, Julia, Romanos, Marcel, Rutsch, Frank, Schaubert, Kristina, Schubert, Katharina, Schulz, Jörg B., Schweiger, Susann, Tüscher, Oliver, Ungethüm, Kathrin, Wagner, Thomas O. F., Haas, Kirsten
Publicado 2022